“The Lord is the light reflected by all. He shining, everything shines after him.”
The Upanishads
I adore my neighborhood in Montana. I live in a little green bungalow that I’d
like to paint blue, which sits on a slight hill under a canopy of tall, leafy
green trees. And I like to sit out on my
front porch in the mornings, sipping my cup of coffee and watching my neighbors
emerge, one by one, from their tidy, flower lined houses, to sip their cups of
coffee in Adirondack chairs in their front yards. They smile and wave at me, “Good morning!”
“Yes, it is,” I wave back, “It’s a beautiful morning.”
This place is vastly different from my neighborhood in
Arizona, where all of the houses had front facing garages, never-ending rows of
cars sized mouths that tended to swallow my neighbors, one by one, before they
even had the opportunity to escape their cars.
While the thinking behind the designs of those desert neighborhoods must
have had something to do with ensuring that no one be inconvenienced by the
heat, they also had the unfortunate side effect of ensuring that no one be
inconvenienced by seeing each other. I
used to get so lonely there. We’ve been
back in Montana for almost eight months now, and it still feels good to be
home.
My neighbors have no idea that my bathroom is usually in the
process of being flooded as I’m waving at them from my front porch. And I sometimes wonder if they have any clue
at all about the kinds of things that go on in our house, but then I remember
that they’re probably too busy thinking about their own lives to give us a
second thought. Cale was in the bathtub,
so I knew that I had a little bit of time to grow a bigger God before the
bathroom floor was completely under water. And I had everything that I needed - a fresh
cup of coffee, a mile high stack of books, and a vague sense that I needed an entirely
new way of thinking.
My existing problems were these. Number one – either God’s an asshole, or he
doesn’t exist. Number two – I am (a
least a part of) God. So I picked a
book, randomly, out of my stack, and was surprised to discover that it was a
new one that I hadn’t gotten around to reading yet. In fact, I don’t even remember buying it, but
the fresh receipt was still on the inside.
I opened it up to a random page, and began to read the things, right off
the bat, that forever changed my conception of God. This is what I read (in a book about Edgar
Cayce by Mark Thurston):
“”Know, O Israel, (Know, O People) the Lord Thy God is
One!” From this premise we would reason,
that: In the manifestation of all power,
force, motion, vibration, that which impels, that which detracts, is in its
essence of one force, one source, in its elemental form. As to what has been done or accomplished by
or through the activity of entities that have been delegated powers in activity
is another story.”
It was talking about “evil.”
Hmm. I read on:
“…we first need to recognize the underlying oneness of God
(yeah, yeah, yeah, I’ve got that already!).
Then we need to recognize that some choices really are life-promoting
and others are not, and that the influence of evil on these choices is a very
real thing. Evil is not separate from
God; instead, it’s a negative way of using that one source.”
I stopped. ““Self
will run riot,”” I thought, and then read on:
“With the gift of free will, we could choose to follow God’s
plan for our development or rebel against it.”
“Lovely,” I thought, rather sarcastically, “There’s the
infamous “God has a plan!” thing again.
But what if God’s plan sucks?”
I reluctantly read on:
“When this first cause (the source) comes into man’s
experience in the present realm he becomes confused, in that he appears to have
an influence upon this force or power in directing same. Certainly!
Much, though, in the manner as the reflection of light in a mirror. For, it is only reflected force that man may
have upon those forces that show themselves in the activities, in whatever
realm into which man may be delving in the moment-“
Huh? Thankfully it
said it again in different words:
“Despite our delusions, we (human beings) really aren’t the
source of the one, creative energy; we are merely able to reflect and direct
it. …think about a mirror, which doesn’t
emit its own light but simply reflects light and redirects its path. Rather than saying, in effect, “I am God,” we
need to be saying “I serve the one God who lives in me.”
This stopped me cold.
I’d never read anything like it anywhere before (and it’s quite possible
that I’d read something like it before but still missed it, because I do have a
tendency to focus on what confirms my own conceptions and leave the rest). I’m not the source of God’s power, not even
in the sense of being a gas tank that needs periodic refilling. There is no gas tank. Of and by myself, I have no power. I’m not a little part of God. I’m not God at all.
Now, this was a tremendous relief. “Oh, thank GOD I’m not God!” I actually said
out loud, but what was disturbing was the idea that I’m either reflecting God
(his light) or I’m reflecting darkness.
No matter what’s going on. Light
or darkness? Those are the choices. And being pissed off all the time, about
things not going my way, definitely isn’t reflecting light. It doesn’t bring any power to anything at
all.
I heard Shane, “Jeeesss!
Bring towels!!”
“Whoop, time’s up,” I thought, so I quickly offered up this
little prayer before attempting to rescue the bathroom floor, “Dear God. Since I, thankfully, am not you, and since I
have already done everything that I can possibly do for Cale to no avail, I am
now powerless to change anything for him.
This means that I am no longer responsible for his well-being. You are.
And I do sincerely thank you for letting me know that. You cannot imagine (well, you probably can
actually, being God and all) what a relief it is. Sorry to hand you such a mess, but I know
that you’ll do a great job. And good
luck!”
Then I went about serving the one God who lives in me by
finding towels.
Later that evening, or maybe it was the next evening, I went
about the business of trying to reflect God’s light. The problem was that I didn’t quite get what
that meant. I mean, it sounds nice. But how, exactly, does one go about
reflecting God?
I met with some friends of mine that evening, and I visited
with one friend of mine, in particular, who had just had a brain tumor
removed. He told me all about his recent
surgery, and then he asked me how Cale was doing.
I told him everything – about our medical insurance company
refusing to help us, about the wait for a Medicaid waiver, about Cale’s recent
injuries and the regression that we’ve seen over this past summer - all of it. I told him that I keep trying to give it all
to God, but that I then seem to take it back again. Then I give it to God, and then take it back
again. Then I give it to God, and then
take it back again, etc. It’s
exhausting.
“I struggle with truly surrendering this,” I said. “Our plan is to give it a year here in
Montana, but if Cale hasn’t been selected for a Medicaid waiver by that point,
then we’ll probably have to consider moving back to Arizona (I had already
taken it back). But I really like it
here, and it worries me to have to consider moving bac…”
“Don’t do that,” he interrupted.
“Do what?” I asked.
“THAT. Don’t do
THAT,” he answered, “Don’t put any limits on God. Don’t say, “we’ll wait until blah, blah,
blah,” or “we’ll do this IF that.” (Oh,
I was glad that I hadn’t told him about the “if God doesn’t do things my way
then he’s not there at all” scenario that I had been wrestling with earlier). DON’T DO THAT.
Don’t give it any negativity.
Just trust that God is taking care of all of you right now, no matter
what.”
He looked at me, just to make sure that I was really
listening, and repeated, “NO. MATTER. WHAT.”
Now, he didn’t actually say, “God has a plan,” but it
sounded pretty damn close at first, which kind of made me want to punch him in
the face. I restrained myself, of
course, seeing as how he’d just had surgery on his head and all:) But it sure hasn’t felt like God has been
taking care of us. It’s felt like God
has abandoned us. So I didn’t buy it at
first, but when I looked up at my friend’s face, he seemed to be glowing. I did a double take just to be sure, and
yup. His face, his eyes, his whole body
was, in fact, glowing.
“Reflection of God,” I pondered.
You see, this person has a wife and small children that are
dependent on him. And he had just had a
brain tumor removed. Can you imagine
that? I mean, put yourself into his
shoes and truly feel that for a moment.
But, you see, I remember him saying all of this same stuff before he had the surgery, before he knew for sure that he was
going to be okay.
He didn’t say that God has a plan. He never said, “I’ll know that God was taking
care of me once I’m healed.” Nor did he
say, “God will heal me.” Nor did he say,
“You’ll know that God was taking care of all of you guys once Cale has gotten
help.” Nor did he say, “Cale will get
help.” What he said was, “No matter what.”
It suddenly became clear to me that while it’s important to
reflect God’s light after something has gone our way, it’s maybe most
especially important to reflect it before
something has gone our way, while things aren’t at all going the way that we
want them too, and while things are still at their most difficult. And my friend had just explained exactly how
to do it - “Don’t put any limits on God.
Don’t give anything any negativity.
Just trust that God is taking care of all of you right now, no matter
what.” That’s what he had done. And, hallucination or not, he was definitely
glowing.
The first thing I did, when I got home that night, was to
turn Cale over to God again, and trust that he would be taking care of us -
whether Cale gets therapy or not, whether anything ever changes or not, whether
I have to give up custody of Cale to the state so that he can go into a group
home or not, and whether Cale becomes so detached from me some day that he
doesn’t notice when I die or not - no
matter what. I didn’t have to like
it. I only had to do it. And, ever since then, I’ve focused only on
the gorgeous things about my life.
It takes a real act of paying attention to your thinking to
do this, I’ve found. In fact, I don’t
think that it can be sustained at all by one simple piece of information. A piece of information can jump start it
again, certainly. But, for me anyway,
better thinking cannot simply come from “getting good and then staying that
way.” It just doesn’t work like that.
There have been days when it has required concentrated doses
of meditation, for however long it takes, to either let go of, or realize that
I need to take care of something, that is bothering me, and to turn my thinking
in a positive direction again. But then,
simply because of who I am, my thinking still tends to take a turn for the
worse again at some point during the day. But lately, anytime I’ve drifted into negative
thinking, I’ve recognized it (tried to imagine a mirror reflecting darkness
instead of light), and I’ve tried to re-focus.
Sometimes I have to call somebody (another Autism parent,
for example) in order to be able to re-focus. And it’s so funny how this works, because
another Autism parent can often lighten me up about the things that go on with
my kids, and I can often lighten them up about the things that go on with
theirs.
The Dali Lama says that when you take on a problem alone,
with the mindset of “I, me, or mine,” then even a small problem be very overwhelming. But when you take on a problem with somebody
else, with the mindset of “other” (if you can get yourself to think about
somebody else for awhile), then even a very large problem can seem tolerable. Plus, I just love the little competitions
that Autism parents have with each other about whose kid is the weirdest-
“My kid got sent to the principal’s office every day last
week.”
“Oh yeah? Well, my
kid got carried out of the classroom by the principal while still in the desk.”
“My kid screamed for two hours yesterday.”
“Mine screamed for five.”
“Mine collects batteries.
I found an entire drawer full of them in his room. I wondered why all of our batteries kept
disappearing.”
“Well, when I looked down at my kid at the doctor’s office,
he was repeatedly licking the wall!”
“I apparently took my kid to speech therapy for years and
years when he was little, so that he could grow up and tell me to “fuck off!”
“My kid tried to touch my friend inappropriately.”
“Oh hell, my kid tries to molest somebody every day.”
“Oh yeah? Well, my
kid flops down onto the ground starts humping the floor right in front of God
and everybody!”
“AAHAAA! HA! HA! HA!!”
Kids with Autism really are kind of entertaining. I mean, you couldn’t make this stuff up if
you tried.
It’s an incredibly useful tool to be able to change my
perceptions of the things that go on with my kids, because, when I only compare
them to “neuro-typical” children, I get so worried about them. But when I hear about how other kids with Autism
really do grow out of these things, I can lighten up a lot. Plus it gives me hope that maybe, some day,
Cale will be able to tell me to “fuck off.”
I feel like my thinking is being reshaped. Instead of focusing on Cale’s screaming and hitting
and breaking things and flooding the bathroom, I’ve been focusing on how he
actually smiles most of the time, on how cute his laugh is when he’s tickled,
and on how he sings (you can’t understand the words, but he’s still singing). And instead of focusing on what it might mean
if he never talks, I focus on the positive things about his not talking – he
doesn’t harass me for treats or toys at the store like my other two kids do,
and he never whines or complains. Of
course, he might start screaming for no reason… whoops! Positive!
See? I’m still not very good at it
yet, but I’m getting better:)
Instead of wishing that Shane and I could go out on a date, I
plan, and rather look forward to, at home dates after bedtime. And instead of wishing that I could have a
career, I write (which is a hell of a lot easier now that school has started
again!).
Any time I find myself thinking about anything negative
(which is shockingly often, I’ve found), I try to turn it around into something
positive. I won’t even allow myself the
discontent of wishing that my house was blue, and instead sit outside on the
front porch and focus on the fact that it’s a rather nice shade of green. Maybe this all sounds kind of silly, but man
does it work well. I’ve been having an
absolutely delightful time. And it’s
slowly been dawning on me that maybe the reason that Cale is in my life is to
turn me into a happy person.
Can you imagine me - a naturally pessimistic, cup is
definitely half empty, incredibly self-centered and intense woman – being happy?
I’ve always wanted to be one of those
light-hearted, happy people. I’ve even
studied happy people and tried to figure out how they do it. And I used to pray, a lot, for God to turn me
into a happy person. Well, maybe God
just finally said, “Okay then, but that’s going to take an awful for you. Hmm… oh, I’ve got it! I’ll give you a child who will literally beat
the unhappy out of you!”
The funny thing about focusing on what’s good, right here in
front of me, at this very moment, is that I feel relatively good most of the
time. And the funny thing about feeling
good most of the time is that I no longer care, that much, why I was trying to
reflect God’s light in the first place.
This probably has something to do with no longer being attached to the
results, and it always seems to be when results actually start coming.
I found a whole bottle of Cale’s old Risperdal (his anti-psychotic)
in my cupboard, and we started giving it to Cale again. I did call the psychiatrist’s office (the one
that never returns my phone calls) and let the receptionist know this, and,
strangely enough, the psychiatrist called me right back:) We now have an appointment with the
psychiatrist for next week!
Of course, I’m not sure how we can afford to keep Cale on
the Risperdal. The only profession that
I can think of that might supply enough money to cover the cost of it is to go
into stripping. The hours would be good –
nights and weekends (when Shane could watch the kids). But, unfortunately, I’m not twenty and cute
anymore, so this would be a reflection a lot of things that nobody should ever
have to see, but God’s light definitely wouldn’t be one of them. Therefore, I’m really not sure how we’ll be
paying for the Risperdal, but, since I’m not God, I’m not worried about it.
Since Cale’s been on the Risperdal again, there’s been a
huge decrease in his disruptive behaviors.
We’ve seen at least ten times less screaming and aggression than we’ve
seen all summer, and I’ve been kind of kicking myself for not putting him back
on it sooner. In fact, just last week,
we actually took Cale, along with Alden and Isabel, to a potluck at a friend’s
house. And we hadn’t done anything like
this in ages.
My friend had a large fountain/pond in her back yard, and,
shockingly, Cale didn’t take his clothes off and jump into it. Instead, he grabbed an entire bag of
Doritos. He walked around eating them, getting
cheese crud all over his hands, and then wiping his hands, whenever he felt
like it, on my friend’s furniture. My
friend told me that she didn’t mind.
And, she genuinely didn’t mind. I
mean, some people say that they don’t mind, but then they really do mind. But she told me that she has animals, and
that her animals get “animal crud” on her furniture. “So I certainly don’t mind a bit of cheese
crud,” she smiled.
Then, when Cale got upset and dumped the entire bag of Doritos
onto the floor and started screaming, nobody said, “What’s the matter with you,
Cale?” Instead they said, “Does he need
more chips? We have lots of chips!”
I could’ve kissed everybody there that day. I mean, there my son was, completely surrounded
by people who love him, and he was actually allowing himself to be loved. I don’t know if it was the medication or just
the general energy in the place, but we ate it up like we’d been starving to
death all summer (because we kind of had been).
We had such a great time.
I was on the front porch still thinking about this, and
thinking that maybe God’s plan isn’t so bad after all, when Shane came out and
told me the news.
The state had called.
They’re going to provide Cale with some “crisis funding,” which I guess
they’ve never done for anyone before, which means that Cale will be getting
three months worth of some of the therapies that he needs. And our caseworker informed me that, since
he’s been approved for this crisis funding, he’ll also go straight to the top
of the waiting list for the next available Medicaid waiver.
“Oh,” I replied, “That’s nice.”
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